There has been so much rain in our area back home lately that some of the local parks have had to close or make modifications to the hike program we love due to heavy mud or down trees. Our swimming instructor sent an email that their pool, basement, and street had taken on so much water and were such a mess that our being away on vacation isn’t the only reason our daughter didn’t have swimming lessons today. Challenging weather comes and goes and can certainly be unpredictable from surprise storms to states of emergency, the worst does happen sometimes and we do not know when.
Today we had the privilege of being part of a river rafting experience, mild when it came to rapids, but packed with the beauty of nature and the friendly hospitality. The experience was rain or shine and after a pleasant initial half hour the downpour that both weather apps and clouds in the sky told us to expect began. Delightfully the kids laughed through almost the entire experience as I ended up hunched over, protecting the cell phones in a bag close to me. And then some hail pounded down as well and all the while we continued to float along. Time didn’t stop and we were in the thick of the experience without a pause or a stop. Ponchos were offered to us by our guide (who was fantastic!), but we chose to persevere without. As I waited for what ended up being two rounds of storms to pass, I watched the delicate raindrops dance on the water and remarked at how beautiful they looked hitting the river.
Watching those raindrops was quite grounding for me in those moments, as was the laughter and relaxed chatter between my children. On a day when I had to make a call to a family member’s doctors, regarding some test results, while navigating spotty cell reception as we traveled, this was a valuable pause. As the weather intruded upon our tour, a glimpse of peaceful, mindful radical acceptance and refocus came into play and provided the pause I needed to keep going.
May we the sandwiched find that pause as we navigate each additional challenge that arises and may we always be able to see beauty in small and big ways while we keep going.
It’s worked out last summer and this summer that my husband and I have taken our four children on a trip for two weeks straight. We have other mini getaways here and there to much closer places maybe once a quarter and honestly most of the time those are just me with the kids for a night exploring a kid-friendly place.
In order to do that as a sandwiched primary support person it 100 percent takes a village. Now I admit I am still in a phase where I am extremely fortunate. Though I am an only child (so there is literally no one to which I can volley the parent ball that I have in the air) my parents were willing to move in with my family of 6 and our golden doodle 4 years ago. They moved about two hours away from the county Mom lived in her entire life and where Dad lived since they were married. We sold two houses and bought one that fits all of us together. So when we go away they just stay at the family home in their routine. And for now, Dad is still making their meals (though it’s pretty simple at the moment because Mom’s on a liquid diet awaiting surgery at the big hospital the day after we get back from this trip and many days he accepts our invitation to just join us in enjoying what I made or what my husband made). Dad is able to let our dog in and out to keep her in her routine, to get her food and water, and to give her her medicine. Mom is able to (and loves to) give the dog plenty of attention and brushes her while she sits obediently every day.
We have a list of phone numbers on the inside of a cabinet door for issues that may come up (plumber, electrician, HVAC, etc, along with some phone numbers for closest neighbors who are wonderful). But as wonderful as they are our neighbors are Understandably busy with their own lives, families, retirement traveling, personal health concerns, and the list goes on. Many have volunteered to help as needed and some definitely have helped with things here and there in the past, but our closer village includes our local close friends. So 7 different couples, my in-laws, and the woman who cleans for us are taking two days each “on call” for if something comes up. I rearranged all of Mom and Dad’s appointments (except one which is over telehealth and would be considered helpful, but not urgent) to make sure there is nothing going on during these two weeks out of their normal routine which includes Dad’s typical errands. Dear friends are taking care of some chores in our absence and the on-call friends agree to either 48 hours straight where they are the ones to call (after us of course!) if something arises (or a few people are taking two single days separated based on availability). Last year Mom and Dad did not have to call anyone except us. We are hopeful that it will remain this way.
We have been truly blessed by the ability to have home health come in on a temporary basis when needed and to utilize short term rehab facilities on a temporary basis for Mom. We have not yet had to privately hire respite caregivers, part-time caregivers, or full-time care-givers. I’ve talked to close friends and family members and the name of one agency keeps coming up as a trusted one, but I cringe every time I think about having to have strangers come into our home to provide help and care. I have already provided some direct care for Mom and I am not opposed to doing so again. But I know that as the only child I will not be able to provide that care around the clock. I imagine the first step will be respite support while my family vacations the next time, unless Mom is in a condition to travel with us which we have done sometimes in the past when renting a house or condo unit or cabin. I cannot imagine what the process of choosing a person or group of people to provide this care will look like and feel like. It’s almost enough to make me want to stay home.
But I enjoy getting away, I have young children and need to live their lives with them too, and my life does not feel complete without my work. I have sought and continue to seek the best possible balance, sustaining a juggling act for the record books. But as my therapist tells me, it’s not sustainable as it is. There will be changes that are out of my comfort zone. We will need more help, very likely before next summer’s longer travel. We will see how it all works out. Maybe next summer it will make sense to bring them along. Maybe it will prove possible to temporarily hire someone we know and trust to provide meal support, reassurance, and help with chores if we do not need direct care for Mom and Dad at that time.
Maybe it will work out better than I could have imagined. We will find a way to manage that we can make work out for the 8 of us and our favorite dog too.
When you’re sandwiched, there simply are no sick days, at list not without getting others (likely multiple others) to accommodate said sick days. This morning the provider at urgent care found red throats for Dad and I and a very red infected ear for me in addition to sinus infections and we headed home with prescriptions for antibiotics.
However, while Dad came home to his awaiting bed (I will say that he grabbed Mom’s protein drink first and got up to make her soup at lunchtime), I came home to more outstanding work paperwork, packing, meal prep, laundry, and errands. My decision to head out right before noon to pick up my prescription and get my 12 year old to the library was questionable because, as I soon realized, everyone was out at that time. The drive thru was packed and someone I just couldn’t handle talking to while sick was in the inside line so did a 180 out of line and headed to the car to move onto the library, sans prescription.
As I was pulling out of the pharmacy parking lot to satisfy my son’s need to read Anthony Horowitz, another medical call came in to get Mom scheduled for the appointment for the gastroenterology provider from the big hospital system who does apparently know about nutrition. I had the wherewithal to tell the caller I was driving and I needed her to pause while I merged and she was very nice and accommodating, but I scheduled that appointment, drove to the library, and came home to just keep swimming.
Thankfully I had a virtual therapy session for myself today at just the right time after losing patience with the kids and simmering with self-loathing over my limits. Post therapy I self-reflective, but also self-compassionate and going to bed very early after taking my antibiotics and leaning on my husband to take care of bed time for our youngest kiddos. Now hopefully it’s a quiet evening in Mom and Dad’s suite or the cell will be ringing.
There truly isn’t sick time while sandwiched. There is no relief for the primary caregivers and advocates, the sandwiched, Unless and Until someone chooses to provide backup. It’s a season without clocking out, sun up to sun down.
Still in the thick of Packing Prison as we have airline tickets and that means that there’s no margin if we don’t leave on time and there’s also no margin for shoving in some extras around everything else in our large SUV. It has to fit in the bags for the plane. And for me, the maximalist, this is my Everest.
Super used to having plenty of room for way too many outfits, all of the bells, whistles, extras, and even the kitchen sink plus little gifts to keep the kiddos entertained in the vehicle. We will head to a local familiar chain store when we reach our destination and figure it out, but there’s just nothing like taking everything you wanted to take and then some. I will admit that I rarely if Ever have used everything I’ve packed in the past and this is a go, go, go adventure trip and all of the kids will have options for some screentime for long drives.
But as I type this and get ready to head to the laundry room to move a load over and put in yet another load after having the kids ALL day (ran to one child’s camp, saw online clients, completed documentation, made simple meals though my husband did warm up an easy dinner, took the kids on a short hike and to the pool with friends, answered a million questions and dried tears ALL before my husband got home from work) I noticed that it is this dark in our bedroom (I stopped in there to fill the toilet paper rack in our bathroom with new rolls after shushing the kids for the 100th time and mentioning consequences to get them back into their rooms) but my husband is lying in bed all tucked in where he has been since around 9:30 PM when he insisted he couldn’t do anything else but go right to bed because he isn’t feeling well, with his headphones in watching an action movie on his phone. I often watch something long after I should be asleep (more on that another time), but I can’t help but feel that I (and many other primary caregiver parents) am getting the short end of the stick while being expected to be the one to stay up late several nights this week to get everything packed and together.
He will pack the car and drive us to the airport and make sure we get everywhere on time. I have it better than many because he is in charge of the tickets and keeping all things related to the hotels, the excursions, the rental mini van, etc etc etc together. And he will drive us everywhere because he likes it and I hate it. But still, I’m packing for 5 and he will throw his own things in on top and will lose zero sleep in preparation for this trip.
He’s driving. I am thankful he’s driving. I guess I’ll be comatose during the travel because it’s unlikely that I’ll be functioning by then and this is nothing new. Someone’s gotta pack and it isn’t going to be him.
A Super Mom of 5 girls who is a friend of mine once texted me that she could not attend something I was hosting because she was in “packing prison” and oh what a prison it is. I am currently there myself, trying to pack for our family vacation while catching up way too much work and other loose ends related to support for my parents for our time traveling. It will be the first time any of our four children are flying on an airplane and my first time flying in 20 years since our honeymoon. We are excited for an adventure and all of the sight-seeing and memory making we plan to do. And a bright spot today was that we found out that Mom does not need to continue the nutrition monitoring bloodwork for which the orders were all screwed up. So no need to keep making phone calls about that. The one phone call my mom made was returned today with the good news. All of the calls I made were apparently for nothing this time as none of them were returned.
Weirdest thing ever though, as I was rushing out of my driveway to take my daughter to art camp this morning I received a call from someone naming a doctor and stating that she was calling from his office and that he is a chiropractor and that I left a message. I was extremely confused and stated that neither myself nor any of my family members have called a chiropractor and she read me back what was supposedly my phone number that she just called me at. I politely informed her that that is not my number (it was not even close). So then there are random wrong number calls. You just can’t make this up.
We are working on figuring out how many suitcases to take and plan to pack all 6 of us in each suitcase and just pull the suitcase we need for the couple of nights we are spending at each location along the way, but we must pack so that the suitcases will fit in the rental vehicle (we practiced with my sister-in-law’s vehicle as it is very similar to what we have reserved) and we have the bag fees per bag from the airlines to consider as well. We will have only a couple of specific spots to do laundry so the packing itself is an adventure.
I will detail my plan for support for my parents, our dog, and our home while we spend this time away in another post, but know that if it is a huge ordeal for you to step away not only from your professional life, but also from your day to day personal responsibilities living the sandwiched life.
And I will end with this. My husband an I frequently remind each other that this is a Trip, not a vacation (a fact that I know many blogs have written about before as it is SO relatable), because the kids will be along, fighting, and complaining and we will just be parenting in another location. But we are definitely thankful that we have the privilege of going and we know we will be grateful for the memories as we look back.
When you are the advocate and caregiver and making the appointments, attempting to make sure the medical recommendations are followed by the patient at home, you are also likely the person who knows who all of the providers are that examined, treated or operated on your loved one. BUT, can you find the phone numbers of every provider? The correct ones? Trust me, you obviously don’t have a direct line to any provider unless you are extremely well-connected so do you know the office number of each provider, each specialist, each lab, each home health agency, each therapy program, each rehabilitation facility, and on and on and on.
You need some kind of organized system to keep track of all of these providers and their phone numbers and the other facilities phone numbers. Trust me when I tell you that while some of it is fairly straightforward and easy to search for online, a lot of it (especially anything that began in inpatient) is not easily located with a simple online search. So often I’ve found what I thought was the number and then spent hours calling more numbers given by those who answered the phone when I called the wrong number until I finally get the right person to put the information I want to communicate into their system and then Inevitably comes more waiting while they have to call me back or have someone else call me back. Guess what often happens then? I either have to repeat myself yet again, after already repeating myself multiple times before that, or someone else has to call back Again. This round of medical issues hit the fan in mid-October 2024 and hasn’t quick since (though there are semi-calm moments in between, before the next storm) and I honestly have not had the time to put everything together well in a portable system in one place. I am much more of a pen and paper girl than a user of electronic systems, but they certainly have their place and portability is definitely tally mark for technology on the Pros/Cons list.
For Mom there have now been two hospital systems that she is being treated by just since she and Dad moved in with my husband and I four years ago, leaving behind the county where she lived most of her life (besides her time in college) to live two hours away. Prior to that there were two hospital systems that treated her, with primary attention from one of them. These hospital systems do not share the same electronic medical record systems and while I am thankful that my husband knows how to “link” the different portals from the different hospital systems, it’s still a pain to try to get information from one hospital system to another. It’s definitely not a game of them playing well together. That’s for sure.
So sometime last week (or sooner) I was warned that the home health agency of the small hospital system who had been coming to our home for Mom again for several weeks was down to providing PT (first OT did what they could do and then discharged her, then eventually nursing did as well, and then PT was talking about it) and I was told that when PT discharged Mom from home health then the mobile lab would have to go away also. Why? The surgeon at the big hospital wanted Mom’s bloodwork every two weeks to show whether or not she is nutritionally sound for surgery. Surgery is coming up. I took her to our local lab the first time which was a fiasco I wrote about previously because I took the handwritten prescription from the big hospital and handed it in at the lab and the PA or NP from the big hospital who works with their surgical team had never done a handwritten prescription for anything before and she did not include all of the necessary information so we had to call to get her to fax a new one and come back hours later, but we got the bloodwork done. Then before two more weeks past a very warm home healthcare nurse told us at our home that while home healthcare was working with Mom they could get us a mobile lab. I was thrilled because it’s one less thing I have to drive Mom out to and I have very little time available not to mention the fact that Mom’s bone on bone knees make getting in and out of the house and in and out of the car very challenging. The home health nurse said that she could call to get us a new order (yep, even though the outpatient lab we were using was part of the small hospital system AND those home healthcare nurses were from a group from EXACTLY THE SAME hospital system (the small hospital system) there is no way to go in their computer system to find the order faxed to the outpatient lab. No No No, instead we have to get a new order for EXACTLY THE SAME bloodwork as we had taken last week because now the mobile lab (who works for EXACTLY the same hospital system) is now taking the blood. The mobile lab drew Mom’s blood twice I believe and as we anticipated being discharged from home health and losing the mobile lab I talked to that friendly RN case manager who works on an outpatient basis from home and mentioned that I believed this was going to be an issue. She confirmed that a new order would be needed but made it seem easy and encouraged me to call her if there was an issue. Well, home health PT discharged my mom two days earlier than expected because Friday was July 4th, essentially ending my mom’s connection to home health on July 2nd. I called that RN case manager right away and left a message, but I haven’t heard from her since (and I did have the right number for her). I assume there is a holiday catch up back up. Anyway, on Monday I called the mobile lab and they said they need a whole new order so take the same blood work (which was ordered to be taken every two weeks and wasn’t “unordered”) from EXACTLY the Same Patient at our home because she is now needing it under “home bound status” rather than as part of services being provided for her from “home health.” I asked if the woman from the mobile lab would call the surgical team who ordered the bloodwork to get a new order. Nope, they don’t do that. My job. Just like everything else.
I was fed up with being behind with my work and with everything around the house and I am packing for our family vacation with the kids so I asked Mom to call for herself to the outpatient lab in town to make sure they had the previous order for bloodwork which worked just fine before they dangled the shiny carrot of the mobile lab. So since we switched to the mobile lab, now there’s no order at the regular lab. We don’t have home health (so No Moblie Lab for us) and we ALSO can’t just go to the outpatient lab this week like everyone else. The bloodwork was supposed to be taken today and there was no one to take it.
The number I couldn’t find was the outpatient office of the surgical team for the large hospital. I couldn’t find it easily online either and ended up leaving a message just after 4 PM today when they had just closed for the day asking if Mom still needs the bloodwork anymore and, if so, could they please send updated orders. I left the message on the voicemail of the surgery office that I know was across the hall from the one where Mom was seen, but I can’t find the right number so I am hoping the office where I did leave the message calls me back tomorrow so I can get the number for the correct office and in the meantime the days will tick by past when Mom was supposed to have the bloodwork. Very much hoping that none of this causes the surgery to be postponed. These days I am relating to the phrase “I can’t ‘adult’ anymore” right now.
Today I got up early to get my mom to an outpatient office of the big hospital system about 45 minutes out of town to establish care with the big hospital’s GI office. We were referred by the small hospital’s outpatient GI after the PA volleyed us to a physician and the physician had someone call to tell us Mom didn’t need that appointment (funny how that all happened after I questioned a bill following a surgeon nicking my mom, leading to her almost dying, and ending up in the ICU and having a wound vac among other things). I assured them repeatedly at that time that I was not taking any legal action, had not even consulted an attorney, and just wanted them to do something to make it right. Such a long story….but anyway, after a couple of long conversations with staff members about why the small hospital’s outpatient GI office essentially got rid of Mom as a patient (when we were only disputing a bill from the hospital stay following a surgeon’s error and our concerns were regarding some of the actions of the small hospital’s surgical team and not GI), we were referred to the office we went to today.
And that provider, a nurse practitioner, though warm in demeanor, said almost nothing (absolutely nothing helpful), told us to follow the surgeon’s recommendations after letting me share a lot about Mom’s past surgical experiences at the small hospital and saying very little then also. She did recommend that we schedule with a PA they just hired who is more familiar with nutrition as the questions we were asking today were about options for food variety while Mom treads water on the waves of her ongoing liquid diet.
As much as that felt like a pointless waste of time, we are hopeful that the next appointment to be scheduled, a meeting with the PA who we hear is nutrition savvy, and one truly never knows when we will need to have GI meds titrated or when there will be unexplained abdominal discomfort along the way. It’s wise to establish care with the offices you may need in the future. It did not feel like that though when we arrived and had to fill out a bunch of forms when we were just at another office (the big hospital’s surgery office) who should really have all of Mom’s info, not to mention that she has been in the big hospital now twice (once for a longer admission) and the other for an extended stay in the ED (out before the second midnight). Why isn’t this stuff in the hospital system’s computers yet? Make it make sense.
I also spent plenty of time on the phone today because of a debacle with the small hospital system again regarding getting bloodwork every two weeks for the big hospital system. More on that tomorrow. And in addition to that I spent significant time on the phone as well with the small hospital system’s oncology office because Mom’s MRI shows a cyst on her pancreas that they want to keep an eye on. We definitely appreciate that, but all of the write-ups from previous scans, including the recent MRI talk about following up in a year, but suddenly there is full-on communication from this office like it needs to be done immediately, though the diagnosis details and prognosis have not changed a bit. Can we say, too many appointments are open so we need to call everyone who could possibly schedule now? Well, they did say that it’s just all about establishing care.
Sometimes you end up thankful that you did establish care and you’re not a new patient.
When I think about who is going to decorate for every holiday, I want it to be me. I overdo my kiddos’ themed birthday parties in the most delightful way. I put so much heart and soul into it I do these parties (with TONS of guests) until they turn 10 years old and beyond that we do more reasonable, chill, fun outings with just a few best friends. One of my local besties and I have had an events business (that is currently on pause as she has received a rare diagnosis that, among other things, is zapping her once vibrant energy and because I have needed to be home for my mom much more since October). And I grew up decorating the house for each holiday (some more than others) and have carried that tradition on.
I shop clearances quite a bit and do so year round (I also shop year round for holiday gifts), but I admittedly am more of a maximalist and find joy in setting everything out for others to enjoy. I will say that I absolutely have price limits for things and will pass 99.9 percent of the time on anything that is priced higher than I want it to be for that item and often hope that I will be back when it’s marked down (or if it’s an online item I occasionally peek back to see if it is marked down, or depending on the app, sometimes they alert me when there’s a price cut) and before it’s done. I definitely miss out on plenty, but always make it all work.
For my kiddos from birthdays ages 1-4 I have a larger family party that includes great aunts and other important individuals who do not necessarily still have children at home to bring along, plus friends and family with kids, and eventually preschool buddies. We are now past this stage with all four kids. From ages 5-10 we do a big theme party with many of the kiddos we know with a fun theme, plus we do what we call the Grandparent party/Grandparent Dinner where we have a separate favorite theme and get pizza or burgers or subs and have the grandparents over separately along with a great aunt who has been part of things for my lifetime (also long ago we had some great grandparents on my husband’s side in the mix for some of these). I don’t repeat themes, simply because I love to do up something new, but I have compromised a bit when a different child really wants something that’s been done. We just put a different spin on it. Starting at age 11, it’s just the Grandparent Dinner with a theme as involved or as simple as the birthday kid chooses. My oldest wants nothing to do with all of this celebrating (very much like his dad) and for his 14th and 15th birthdays we compromised on the “theme” simply being a color. First blue, then the next year, green. My second son, a big sports fan, has had an NFL dinner, an MLB dinner, and this year our favorite college teams merch will create the 13th birthday vibe. This son will also spend a morning at a trampoline place with a handful of friends on another day and we have plans for some favorite foods and a Marvel movie. Planning an outdoor movie Bash coming up for our son turning 9 soon with Soccer on deck for the Grandparent Party. And our daughter is turning 7 very soon after that and will have a bring a favorite doll, stuffy, or action figure tea party with an Alice in Wonderland vibe. Already gathering (and making) all the fun things for less, making my lists, and checking them twice.
And today I am family picnic ready (for just my kiddos and all 4 of the grandparents) with my decor. But we will be grabbing made to order subs this time and starting at 2 PM so we can enjoy all the way until we drive to our new firework-watching spot. I have a few go-to things that I cook, but I don’t love to cook. I do some of the holiday food prep, but when I can sub it out or order in, I love to. My husband is very particular about food and has kind of taken on a lot of the weekend meal prep and providing some kitchen support throughout the week. We also spend tons of time using convenience foods which is a story for another day. Enjoying my slower morning and hoping to find some family connection and some more downtime as the day progresses. Mom says she feels up to joining us for some of it and we are grateful for that as we are for every day she is able to remain at home.
My husband and I celebrated 20 years of marriage today and we had an amazing dinner out at a restaurant we love in a city where we lived when we were first married. I was going to grad school at that time while he started his first job. Those dinner plans materialized at the last minute and, while thoroughly enjoyed, made us realize that we are not prioritizing the sandwiched advocates/caregivers/managers of this family, us.
If your person is currently sandwiched, especially if that person is the primary caregiver of the family. make those plans to take that person out (or if not possible to make a day in the best day!). Also, find a way to give that person time off to relax and prepare for an enjoyable time of connection, time to make the date last (if you can get away, obviously do that), and time to recharge a little the next day before returning to the usual roles and responsibilities.
And if you know the sandwiched and you’re able, offer to stand in for them for a day or more or to take on some of their responsibilities. Or maybe offer a gift card for part of the date or to pay for part or all of the caregiving services that they will need to get a break. Consider who you can support as they take just a little break from those who need them the most. For many there is no real time before or after work that they can count on consistently, no weekends off, no vacations without significant planning. It can be all-consuming and everyone needs to recharge sometimes, but not everyone can.
My daughter is almost 7 years old (and is currently having a tantrum over the tissue box I gave her for her room that she does not want while I am attempting to write this in the first spare moments I’ve had today) and she asked me a little while ago why she and her oldest brother had to find me her plastic toy tiny house the other day so that he could take a picture of it for my blog. I told her that I wrote the story of what her oldest brother is (and is not) offering to do for my care as I get older and need care and support (See the June 25, 2025 post for that full story).
At that time she expressed that she understood (and just now told me she loved me and skipped away with the tissue box she picked out from the closet herself) and proceeded to lavish me with all that she plans to do for me in my golden years. Her mommy is going to live in a large house with her and her family. There will be an art room, a relaxation room, and any room I want. She noted that she will build robots to provide me with spa services on demand and, very importantly, expressed that we will have many choices at every dinner (with a family of our size she hears at least one person saying “that’s disgusting” about the dinner we have before us).
Sold!
After receiving the precious gift of three amazing sons, I was prepared to go all-in with the “Boy Mom” merch and give up the dream of Also having a daughter when I entered my gender revealing ultrasound while expecting my fourth. I ended up asking the following question about a thousand times to the ultrasound tech who I believe was fairly new as she announced that I was having a GIRL!! “Are you sure? Are you sure? Are you sure?” What a mountaintop moment! I enjoyed a lot of baby girl shopping that day. Looking forward to moving into that utopia one day. Hope it’s still available when I need it!
Sandwiched Support 